not all “patients” are created equal

Recently I (KW) was reminded again that not all “patient” voices are treated equally.  All one has to do is look at two Congressional hearings held in Washington DC last month to see how different “patient” voices are represented. The House Energy and Commerce subcommittee has been holding a series of hearings on their bipartisan initiative called 21st Century Cures.  They have heard from a variety of stakeholders including the “patient” perspective.  The “patients” that they heard from were those representing large disease organizations (such as American Cancer Society, Cystic Fibrosis Foundation, National Organization of Rare Disorders) that have financial backing from industry.    Their main narrative was “we need more innovative, life-saving treatments quicker.”

Contrast this with the Senate HELP hearing titled, “More than 1,000 Preventable Deaths a Day is Too Many:  The Need to Improve Patient Safety” and a completely different “patient” voice was heard.  The panel was stacked with patient safety advocates including John James who lost a son to medical error and Lisa McGiffert, director of Consumer Union’s Safe Patient Project.  Their message represented the voice of many patients who live every day with the consequences of a failed medical system.

Where was this patient voice at the 21st Century Cures hearings?  We need to make sure the safety/risk side of equation is also represented at these hearings. It needs to be a balanced debate of risk vs benefit.

It is also interesting to compare the attendance by members of Congress at both hearings.  The House hearing was packed with virtually all members of the committee present.  The 21st Century Cures initiative is getting a lot of attention as there’s big money at play.  Contrast that to the Senate HELP hearing on Patient Safety where there were only a few Senators present with little attendance from the general public.  (Side note: when I testified before the Senate HELP hearing in 2007 on PDUFA/FDA, it was standing room only and virtually every senator was present except Senator Obama.  It was at this hearing I learned about “line holders” being used by Pharma and lobbyists to ensure they had a space in the room.  There were several people who weren’t able to get into the room and had to watch the hearing in overflow room.)  It’s clear that patient safety doesn’t get the same attention as other hearings like 21st Century Cures and PDUFA.  Just follow the $$$$.

Patient engagement and satisfaction have become trendy concepts and we must be aware which “patient” voice is being used.   Industry likes to use front groups, and present its positions through “patients.”  It needs “patients”  to become “customers” who buy more drugs, more devices, more medical services, etc.  There’s an inherent conflict of interest when  “patient” organizations  are funded by industry money.

Unfortunately, the FDA, Congress and the media hear mostly from these large funded disease “patient” groups which often give a pro-industry narrative.  They have a strong voice, organizing power and the financial backing to make sure their story is told.

It’s time to lift up a new conversation involving non-conflicted, unaffiliated citizen/patient safety advocates.  Not just “patients,” but patients whose first allegiance is to patient safety. All of us advocating for healthcare reform should support and partner with these kind of advocates. We need to make sure the patient safety voice is not only represented, but can be heard over the noise of money, politics, and power.

No small order, to be sure.